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Powerless poor make handy research subjects

For more than a century, the medical and pharmaceutical research industries have routinely exploited the poor.

Some aboriginal children in residential schools were used as research subjects. (Star file photo)

By Tom Koch

Wed., July 24, 2013

The truly shocking aspect of last week’s revelations concerning the use of native children as research subjects is that we were shocked by the revelation. For more than 100 years medical and pharmaceutical research industries have routinely used the poor and powerless as research subjects.

This has not been genocide, which requires a wilful intent to destroy a people, but something even more horrifying: a studied indifference to their fates. The same attitude today transforms the needy and poor from patients into research objects across the industrial world.

In my recent book, Thieves of Virtue, I catalogued a part of this sorry history and its relation to contemporary research practices. There I began with an address by Canadian physician William Osler, who in 1907 condemned the use of poor patients as research objects. At that time, a mini-scandal had broken out over medical research on the young inmates of an orphanage in the United States.

“We have no right,” he said, “to use patients entrusted to our care . . . unless direct benefit of the individual is likely to follow.” Osler’s demand that research is secondary to patient care was largely ignored. In 1932, the U.S. Public Health Service began a now infamous project tracking the progress of syphilis in poor rural farmers. They were offered no treatment even when, in the 1940s, effective treatments became widely available.

With the approval of varying government agencies, researchers in 1956 infected handicapped children at New York’s Willowbrook State School with live hepatitis virus so they could study the effect of then new gamma globulin treatments on the disease.

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In 1951, physicians at Johns Hopkins University in Baltimore, without permission, took cervical cancer cells from Henrietta Lacks, a poor black woman they were treating. The HeLa cells, as they became known were “immortal” and became a critical resource for cancer researchers. Doctors at Sloan Kettering’s Memorial Hospital, and later New York’s Jewish Hospital, wanted to know if these cells were still alive. To find out they inserted, without permission, those cells into patients who were mostly poor, illiterate emigrants. Some developed cancers as a result.

When charged with “unprofessional conduct” the physicians involved said the use of the poor as research objects was a common and accepted practice. In the face of public outcries — the United States Congress commissioned what would later be called the Belmont Report which stands today, in theory if not in practice, as an international bulwark of patient protection.

What the report did was distinguish the “patient” in care from the “subject” of research forgetting, conveniently, most research subjects are also patients. The protection was insufficient, in the 1980s, to protect the lives of research volunteers like Jesse Gelsinger and Ellen Roche. Both died from the administration of test materials whose safety was assumed rather than verified.

At hearings convened by the U.S. Senate, investigators reported that protections supposedly in place were largely ignored. Over a seven-year period, only 39 of 691 “adverse events” were “reported in a timely way.”

We like to think the transformation of needy patients into research objects is only history. Nothing is further from the truth. The pharmaceutical and research industries today rely on human subjects as research objects in studies that might, or might not, result in some new insight and eventually a new treatment.

As Jill Fisher writes in Tissue Economies, in the United States it is not uncommon for those who can’t afford health insurance to have enrolment in a research program a precondition of their treatment.

Bioethics was begun, in theory, as an ethical approach to advance patient rights and protections. It has, however, been largely complicit in the advance of the frail patient as a research object. Bioethicists in this area typically focus upon future goods to be obtained by research over the needs, safety and choices of patients in medicine. Thus a number of well-known bioethicists have called for the forced enrolment of patients in research trials as a “civic obligation,” in the words of England’s John Harris. They may choose the program to be enrolled in, says New York bioethicist Rosamund Rhodes, but enrol they must.

As Canadians, we like to think we’re different — and better. The sorry history of the use of aboriginal children is probably only one of numerous examples that will be discovered. We have, in these areas, typically followed the lead of American ethics and law. Today, Canadian patients are regularly enrolled in research programs in which safety is uncertain and outcomes are unclear. We’re told it is for the benefit of future others even if the work is unlikely to save or improve our fragile lives.

I might almost wish for wilful genocide. That’s an evil we can name, and confront. This is “just business” in a business where the lives of the fragile are important only as a means to a profitable end in which everyone gains but the patient.

Tom Koch is a Toronto-based consultant in bioethics, gerontology and public health.

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